Originally posted on cysticfibrosisnewstoday.
Second in a series. Read part one.
In my previous column, I described my complicated relationship with antibiotics and antimicrobial resistance (AMR). As a cystic fibrosis (CF) patient whose pre-transplant lungs were greatly impacted by the lack of available antibiotics, I’m one of many advocates fighting for a new pipeline of medicine.
Our community’s fight reminds me of the musical “Titanic,” as both demonstrate how a crisis affects people differently. Following is a breakdown of the musical’s characters, including how likely each group is to be affected by a crisis — whether it’s a sinking ship or AMR.
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The workers
At the very bottom of the ship, we are introduced to the workers. These are the characters I identify with. I was born with CF, a genetic disease that enables chronic infection. As such, I’ve spent much of my life avoiding and battling illness. Keeping my daily life running smoothly requires a lot of medication, energy, and effort. It’s hard work. Similarly, the workers on the lower levels of the Titanic must work hard to keep the ship running smoothly.
The workers are also the first to experience the effects of the iceberg. Unfortunately, as events like the pandemic or the sinking of the Titanic have shown, those at the bottom of the social hierarchy tend to be treated like they’re expendable. Like workers, chronically ill patients should feel protected, especially if we’ve been warned that the ship is sinking and we’ve developed AMR. Measures should be put in place so we don’t have to look out for ourselves.
Third class
Next, we have the third-class passengers. They’re the first passengers to see the effects of the iceberg. Some are unable to access the lifeboats, while others elect to stay on the ship to avoid the chaos. All of this speaks to their lack of accessibility and protection. They have no choice and no voice.
I view these passengers as patients who are affected by health crises, but not as severely as some. In terms of the AMR crisis, CF patients whose access to Trikafta (elexacaftor/tezacaftor/ivacaftor) has limited their exposure to infection could fall into this group. Patients with short-term bacterial infections may fall into this category, along with newly diagnosed CF patients and older populations. In short, they may not have been a part of this group since birth or require daily antibiotics, but they’re still in need of help.
Serving staff
At the top of Act 2, after the ship hits the iceberg, the stewards wake the passengers. They don’t have much information, but they still take it upon themselves to warn the guests. Their closeness to the situation prompts their timely advocacy. If everyone spoke up when people are in danger, it could save lives.
Second class
These passengers aren’t yet affected by the crisis, but they know it’s coming. They’re listening to people on the lower levels and the staff. They’re acting as allies and advocates, selflessly and proactively. The narrators of the musical, I like to think of this group as research scientists or healthcare professionals.
First class
More concerned with their afternoon tea than the health of the greater good, the upper-class passengers didn’t see enough proof of the ship sinking to be worried. Hence, this group was the last to see the effects of the iceberg. They didn’t listen to the warnings and they ignored the cries for help. In some cases, they refused to believe there was a crisis and tended to “more pressing” matters. Later on, some had access to a private lifeboat (let’s call this health insurance), which lessened their concern and urgency. Others thought only of themselves when the lifeboats started to board.
Is there a percentage of people who must be affected or die before the “upper decks” of our society take the AMR crisis seriously? Thanks to research done by organizations such as the Cystic Fibrosis Foundation, we have proof that CF patients (among others) need antibiotics.
Builders
The Titanic’s builders marketed the ship as unsinkable, but they were aware of the ship’s flaws. They prioritized things like first-class passenger experience over lifeboats, a protocol that benefits everyone. In certain cases, the ship’s administration went out of its way to grant access to certain passengers and deny it to others. Decisions like these made the ship and its passengers vulnerable.
Often, people think the AMR crisis won’t affect them. Then, suddenly, it does. I don’t want to mourn the loss of any more people. If we can save the sinking ship, we must.
Think of the workers and those below deck whose need for antibiotics is out of their control. Think of the stewards who went out of their way to spread a word of caution. Think of the upper-class people who elected to believe there was no crisis. We can prevent another tragedy, but it will take all of us. In the words of the stewards aboard the Titanic, “Wake up! Wake up!”
In my next column, I’ll discuss the Pasteur Act and the importance of antibiotic-related advocacy.